She Wants to be a Mom

   My daughter, Alyssa, graduated from kindergarten a few days ago. I curled her hair and let her wear Chap Stick for the grand occasion. I helped her put on the little cap and gown and then I found a place with my family to watch her walk across the stage to get her diploma. There were the usual welcoming remarks followed by a slideshow. Each child had several pictures that her or his family had provided followed by a snapshot of them holding a chalkboard sign proclaiming what they want to be when they grow up. There were doctors, veterinarians and bull riders (we are in small town Texas after all). I expected Alyssa’s to say hair stylist or Elsa. Instead, it said mom. I heard the room sigh as the audience read that simple word. I imagine the others in the room thought it was sweet and cute for her to give that as an answer. I teared up as I stared at the screen though because I know what that word means to my baby girl.

   I was never the little girl who dreamed of growing up to be a mom. I spent more time riding horses than playing with Barbies. When I was assigned the home economics doll in high school, I used it as a football and cracked the battery case. And yet, being a parent has been a key part of my identity for the past decade. Today, I am one of Alyssa’s two moms. She has a birth mother whose parental rights were terminated by the state for abusing and neglecting her children. She also has me. I was her foster mother for almost two years before my husband and I adopted her. 

   Alyssa was only two and a half years old when she came to us but she had already lived through more than most adults. This tiny little child was so full of rage that she would scream for hours. She didn’t speak but would flip people off if she did not like them. She hit me, kicked me, and spit in my face. She broke anything she could and sometimes hurt herself when she was angry. I spent countless hours sitting on the floor with her in my lap, holding her while she screamed. I also walked away frustrated many times. There have been moments when I completely rocked it and helped her work through the grief of being abandoned by her first family. There have been other times when I completely failed and did not react with the compassion she needed in that moment. Through the ups and downs, I have stayed though because I believe that family is forever and real love stays even when it’s hard.

   Family and love were foreign concepts for my daughter when I met her. She had been bounced around between unhealthy homes and shelters. She had experienced loss and hunger and absolute fear. She had no reason to suspect when she came here that our home would be any different. Even after our adoption, Alyssa would ask several times each day if I was still her mom. She does that less now but that fear of abandonment still rears its ugly head sometimes when she gets in trouble and she goes back to being the scared little girl who believes no one really wants her. In those moments she occasionally asks if I will still be her mom as if I might disappear while she takes a timeout in the corner. “Always and forever” I tell her. “No matter what you do, we are family and family is forever.”     

   I’m just an ordinary mom. I’m way too busy and I burn dinner more often than I should. My house is messy and I couldn’t find a pair of matching socks to save my life but somehow, in all of that, my little girl found a definition of family different than the one that she was born into. As her picture flashed across that screen, I sat in amazement at how far she has come. The little girl who came to me so broken, now has an idea of what it means to be a part of a family and actually dreams of having her own someday. 

   I don’t know what the future holds for Alyssa.  She still struggles with her past and her special needs add additional challenges to her future.  I do know that she overcame the odds and learned to love in spite of the pain.  Alyssa wants to be a mom and I couldn’t be more proud.

I'm Not Dancing

   If you ask adoptive mothers about things people say that make us roll our eyes, remarks about how lucky our children are to have us will always make the list.  We argue that we are lucky to have our children and it is not the other way around.  My kids are not lucky to have been so abused and neglected that they required an entirely new family.  However, I still recognize that Alyssa’s life and medical care would be much different if she still lived with her birth mother.  It is likely that she would not receive many of the services and treatments that I have advocated for.  It is likely that her first family would not be able to devote the resources needed to have her in an appropriate school or be able to focus on her health in the way that we are. 

   Those are uncomfortable thoughts. Alyssa is a child worthy of every treatment, therapy or resource that can help unlock her potential.  She deserves that, no matter who her family is, just like every other child does.  The fact that she is now my daughter does not imbue her with some special status that now qualifies her for a better outcome, or at least it shouldn’t.  She is valuable because she is valuable because she is valuable.  The end.

   I believe that all children are valuable and precious and worthy of the best medical care.  I believe that when kids get sick, it is our responsibility as a community to work towards healing and treatments that can at least improve their lives whenever possible. When it comes to children, demographics, family economics and specific diagnosis should not matter.  Unfortunately, this week the Texas legislature showed that they prioritize some patients over others and believe some conditions are more worthy of treatments.

   A bill legalizing medical marijuana, in an extremely limited form, is on its way to the governor’s desk.  I absolutely believe in legalization (as I have written about here) and I should be celebrating.  I am not.  First, there are many holes in the law that passed.  (You can read a great article about that here.)  It is poorly written and does not allow different ratios of THC, which are often needed to treat patients effectively.  Still it is a first step.  What bothers me more is the implication that my suffering child is more worthy of treatment than someone else’s child because of her diagnosis.

   This law explicitly states that only CBD oil is allowable and only for people with intractable epilepsy.  If you don’t know, medical marijuana has been a game changer in the world of epilepsy.  For the 30% of patients of who are not able to control their seizures through available medical treatments, this plant has been a godsend.  It has provided hope to families fighting epilepsy that had no hope before and it has effectively worked when nothing else has. At the same time, the movement towards legalization has also brought unprecedented awareness to epilepsy and our fight for a cure.

   Medical marijuana has also helped veterans with PTSD gain control of their symptoms and live normal lives.  In other states it has been used to treat kids with Crohn’s disease or multiple sclerosis.  Although the research is still in its infancy, due to archaic federal laws, even some people with autism seem to show improvements when treated with different ratios of CBD and THC.  Medical marijuana also works wonders for many people battling cancer.  Yet somehow in the movement to gain treatment for our own children, we decided that all of those patients were somehow less worthy of treatment because they carry a different label than our kids. 

   Many parents of kids with epilepsy are passionate about the push for medical marijuana because we understand the cost of every delay.  Our children are dying while they wait for legalization.  We have lost several children to seizures while they waited for their last hope to be approved by politicians who were more concerned with their own agendas than in letting us have access to a lifesaving plant.  That is devastating and unacceptable.  It is equally appalling that we would deny other parents the chance to save their children.

  I should be dancing because we finally have some semblance of legalization.  I am not.  Instead I find myself very conflicted.  I am angry that politicians were so busy fighting about another bill that they did not vote on the comprehensive medical marijuana bill.  I am sad that many of the marijuana refugees will still not be able to come home.  I am frustrated the current version may not be broad enough to create the infrastructure needed for us to actually have access to the plant we so desperately need.  I am heartbroken that a gain for Alyssa does not equate to hope for my friends whose children are also facing life-threatening diagnoses. I am hopeful that when the politicians realize that limited legalization does not lead to the fall of civilization as we know it, they will come together and create a more comprehensive set of medical marijuana laws.   I am hopeful that this small step leads to more.  I am hopeful, but I am not dancing. 

I’m a special needs mom and I need you to hold my arms up.

   When I was a little girl, my mom and I would get up early most mornings to read the Bible together.  I always loved the stories in the Old Testament of battles and heroes and romance.  I pictured myself as Ester speaking for her people, Deborah leading the armies into battle or Rahab saving the spies.  In my daydreams I was the Biblical version of Wonder Woman, stepping up and saving the day when the men failed to get the job done.  These days I’m too tired to play warrior princess.  Since Alyssa got sick, there is another Old Testament story that has resonated with me though. 

Alyssa is 6 and has PCDH19 Epilepsy

   In Exodus 17, we read a story about a battle that the Israelites fought with Amalek.  In this particular battle the Israelites prevailed so long as Moses held up his hands but he grew tired as the battle raged.  As his weary arms started to sink, the enemy grew stronger.   Seeing this, Aaron and Hur found a rock for him to sit on.  Then they did something that changed the course of the battle.  They stood beside Moses and they held his arms up.

   Parenting in general is hard work but when a child has special needs it can start to feel like an impossible task.  There are so many appointments and emergencies and daily trials that it is enough to make your head spin.  Ironically, as the world implodes and we need help the most, many special needs parents find their support systems dwindling.  Some people choose to abandon us because our new lives don’t fit their sense of perfect.  Some shrink away in fear that our tragedy might wear off on them.  I honestly think though that most stand back because they don’t know what to do.  In the face of what seem like insurmountable obstacles, physical challenges and emotional devastation, they simply don’t believe that they have anything to offer.  That could not be farther from the truth.

Alyssa hanging out in the hospital in March 2013

    As I reflect back over the past two years, I remember many times when I felt like I was Moses, alone on a mountain, growing weary of the fight.  There were moments though, when people came beside me and helped me bear the load.  In small acts of kindness, friends and strangers came along and held our arms up.

It was the small town pharmacist who saw us adding yet another medication and took the time to ask if I’m ok.

It was my MMA instructor doing an entire class of just punching the bag because I was too raw for anything more.

It was the time at work when I broke down and every woman in my office stopped what she was doing to hold me while I sobbed.

It was random text messages from people saying that they were praying for me.

It was my mom sitting with Alyssa so that I could sleep for a few hours after being awake at the hospital for days.

It was our brand new babysitter being willing to keep Alyssa even on bad days so I didn’t have to quit school.

It was the other mothers in a Facebook group who understood the true intensity behind a simple post of “I hate epilepsy” and offered their virtual support from around the globe.

It was the friend who let me take off the mommy hat for a little while and talk about school or clients or some other gossip that helped to balance out my brain.

It was the people who gave my boys grace because they understood how hard it is to watch your sister fall apart.

It was the teacher’s aide who gently held Alyssa as she crossed the stage so she could still receive her pre-k awards last year after seizures left her disoriented and unstable.

Christmas 2014

   What I want you to notice is that few of the things I have listed are world changing actions but they were slivers of light in an otherwise dark time.  They cost their givers very little but meant the world to me.  There was no special skill or expertise required, only the willingness to stay when our life was anything but pretty and we were too depleted to give anything in return.

   The truth is that you usually don’t have to do anything extravagant to support the special needs parents in your world.  I don’t need you to fight my battle.  I don’t need you to have all the answers or the perfect plan to win the war.  I just need you to stand beside me sometimes and hold my arms up.

                                                                                  

My partner in crime.

Cautious Optimism

   This morning Hubby and I got up at the crack of dawn and braved rush hour traffic for an appointment with Alyssa’s epileptologist.  (An epileptologist is a neurologist with 2 additional years of specialized training who only treats epilepsy.)  We hadn't seen her since December because Alyssa is fairly stable at the moment.  In fact, in May we will have made it one year without a tonic-clonic seizure (what used to be known as grand mal seizures.)  

Daddy, Alyssa & Super Bradley checking out the games at the children's hospital.

   A year without seizures is a huge milestone in the world of epilepsy.  Ironically, it is also terrifying. If Alyssa maintains her streak over the summer, then in the fall we will start to slowly wean her off of at least one of her medications. I have a love / hate relationship with those medications.  On the one hand she takes large doses of mind altering drugs every day with a whole slew of side effects and an undetermined impact on her development. On the other hand, those drugs are keeping her alive.

Pink band-aids and suckers make everything better.

   The other fly in the ointment is that the lack of seizures is allowing us to see the behavioral and cognitive challenges that Alyssa faces.  She is a complicated kid in that regard.  It is hard to tell what is the medications, the disorder, damage from seizures or a result from the abuse she suffered before coming to us.  What is clear is that we have a long road ahead of us.

   Tonight, I am cautiously optimistic.  I am choosing to enjoy this space between clusters, regardless of how long it may last.  I am choosing to be grateful for the amazing team of professionals that we have built even as we amass more specialists.  I don’t know what tomorrow holds, but I am looking forward to hitting the one year mark, and whatever comes after that.

Spring Break Project

The kids have been on spring break this week and we have had a great, relaxing time hanging out at the house as a family.  After all of the cold craziness, the weather turned out to be perfect so we spent the majority of our waking hours outside.  We all did little things around the place but Noah had his own project and I am so very proud of him.

At the beginning of the week, we decided to give Noah our old chicken coop.  A few years ago, a stray dog ate all my chickens and I never replaced them. They were mostly pet chickens (in fact they only laid one egg in the 7 months I had them) and I was afraid of getting attached to new birds and then having them get attacked too.  I fully recognize my relationship to chickens is not normal but they were sweet little guys and I was bummed.  Back to spring break... this is what we gifted Noah.

That's his spy pose.

He really wants to be a spy and obviously if you want to be a spy you have to have a clubhouse.  It had gotten into pretty bad shape though.  The roof was falling off and we were using it to store some hoses for our insulation machine so we all worked together and cleaned it out.  The hubby also fixed the roof but it was all Noah from there.

It was quite the diamond in the rough.

 All week long Noah worked.  He did odd jobs around the house in the mornings to earn money for spray paint and spent his afternoons hours getting it perfect.

It was a messy process. Fortunately we now have (almost) all of the paint out of his hair.

On Saturday, he put the final touches on his new clubhouse.  He is so proud of his creation.  

Presenting Noah's first "flip" and the international headquarters of MAPSER.

A Valentine's Apology (sort of)

I feel like my children deserve an apology for the fact their Valentine's parties coincided with grad school. I stayed up late in Thursday night to randomly place generic stickers all over a pre-colored box. I would like to post a picture but I'm afraid that my pinterest account might get deactivated for the absolute lack of creativity.  Ok. Here it is. Don't judge.

At this point,  half of you are thinking that at least I didn't send her to class empty-handed while the other half wonder why I haven't had my mommy-card revoked.  Personally, I think she's lucky I didn't send her to school with last year's Easter basket. (It is pink and sparkly and I was really tired.)

The guilt really comes in though when I look at previous creations. For Noah's first Valentine's Day school party he got a space ship. The next year he had a Captain America shield. That was BS (Before gradSchool). I had time to sleep back then. I also had 1/3 of the little people in my house as a do now. They were simple times. I could be creative.  I could go to the parties. I could paint with him. I could sleep.

My rational husband is quick to point out that I don't remember any of my Valentine's boxes and that's not why I am crazy.  Hopefully next year, when things are calmer,  I can go all out and make a cereal box monster or paper towel roll castle.  If not, I'm seriously considering just downloading pics of some really extravagant boxes and photo shopping them next my kids faces. Then when they are 34 I will sob hysterically that the don't remember the painstaking effort I put into making every holiday pinterest perfect for my little angels.

A Child of Texas

I remember the day I met Alyssa.  I was her younger brother’s foster mother so when the family member she was with could no longer keep her safe, CPS called me first.  My husband and I had signed up to foster with the hope of adopting at some point but we had been clear that we did not feel up to taking on a special needs kid.  When the caseworker explained the situation, she said that Alyssa had seizures as a baby but had outgrown them.  She was still on some medication as a precaution but I was assured that she did NOT have epilepsy.  Sometime I wonder what my answer would have been if anyone had known the truth about her little brain back then but regardless, Alyssa joined our family that night. 

Alyssa was two and half years old when she came to us.  She was mostly non-verbal, had some developmental delays and would scream for hours at a time.  It was tough road and there were times I thought I could not handle one more day.  Eventually the mama bear in me won out and I fell in love with the broken little girl who needed someone to love her through the pain and defend her in a system that did not always seem to have best interest at heart.  In November of 2012, 14 months after she came to me, the court terminated parental rights so Alyssa and her little brother, Bradley, were in route to becoming our forever children.  Christmas was amazing that year.  It seemed like everything was coming together for our little family.

On January 10^th, 2013 our perfect world collapsed.  Alyssa had a seizure on the way to school that morning.  She had only had one cluster of seizures in all the time she had been in our home.  That was a few months after we got her and her doctors said it was an anomaly, a result of the stress of being a foster child.  This time it wasn’t stress.  I laid her down beside me and she seized again and again and again.  We went to the emergency room, then took an ambulance to Cook’s Children’s Hospital.  Over the next three months we were admitted to the hospital six different times, went through multiple medications with horrid side effects and were driving several hours each week to see various specialists who might have an answer.  In spite of everything, Alyssa regressed to the point that she was back in pull-ups, could barely speak or walk some days and did not always know who we were.  Through therapy, she had worked past most of the delays she had when she came to us and was a fairly typical four year old but now there were days when she would simply lay in bed and stare with a vacant look in her eyes. 

An allergic reaction to an anti-seizure drug caused Alyssa to swell and spend several days in the hospital.

Our adoption had not been finalized yet, so Alyssa was still a foster child at that point.  We were lucky to have some amazing CASA workers, one of whom was a retired nurse who joined me at an appointment with Alyssa’s neurologist so that she could report to CPS exactly what the prognosis was.  The doctor could not explain the sudden onslaught of seizures and had little hope that Alyssa would ever be back to normal.  Shortly after, I was asked if we still wanted to adopt Alyssa.  Her caseworker said that she knew this was not what we signed up for.  We never planned to have a special needs child and they understood if we wanted to back out.  On May 31^st, 2013 my husband and I adopted Alyssa and Bradley. 

Adoption Day!

Eventually, we found a cocktail of medications that is currently controlling the seizures but not without some serious cognitive and behavioral side effects.  Alyssa is in speech and occupational therapy and has gained a lot of ground but regresses any time she has breakthrough seizures. One year ago, genetic tests revealed that she has PCDH-19 Epilepsy.  It is a rare and severe type of epilepsy with devastating complications.  Up to 70% of the girls with PCDH-19 develop cognitive delays.  Mental illness and behavioral problems are common.  Alyssa is also at an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy).  With this diagnosis, we know that if we can’t control the seizures, she will continue to decline.  As it stands, we have had to consider leaving our home and family to join the exodus of families who have forsaken everything in hope of a cure in Colorado.    

I know that there are people all over the world who are being forced from their homes and in the grand scheme of things, our situation is mild.  Honestly, if you are going to be forced to move somewhere, Colorado is about as good as you could hope for.  The mountains are beautiful and the people are great there, but Texas is our home.  Packing up would mean starting over.  My husband is a driller in the natural gas industry which is not prominent in that part of the country.  Leaving would mean abandoning our friends and our family and our church.  Worst of all, it means not ever coming home.  Crossing the state line to spend Christmas with my parents would mean risking arrest and even losing custody of our children for possessing the medicine that my daughter needs to stay alive. 

Alyssa

Alyssa is our daughter but she is also forever a child of Texas.   She was a foster child who legally belonged to the state and people of Texas.  When Alyssa was abused, the state stepped in to protect her because as a society, we believe that it is our obligation to care for our children when they need us.  When we refuse treatment that could give an innocent little girl a chance at normalcy and life without seizures or side effects, we are denying our responsibility to her, and other sick children in our country.  The failed war on drugs has created countless victims, including several children with epilepsy who have died waiting for laws to change.  It is not just those families who are broken right now, our entire country should be mourning the loss of our children whom we failed to protect.  I am adding my voice to the thousands of parents of children who are demanding the legalization of medical marijuana because I believe that our children should have access to a plant that is being effectively used to save their lives.  It is time that we stepped back from ineffective and non-scientific bans that keep medicine from kids who have no other hope.